Saturday, May 30, 2009

Test Date

We found out yesterday that Mya's tests in Cincinnati will be on Wednesday July 22nd. We were put on the waiting list so hopefully we get in early! I was hoping it would be a little sooner....but feel like I can't complain since our first appointment was not suppose to originally be until September!

She also went 24 hour without vomiting yesterday! Hopefully we are on the right track!!

On a sour note....Mya had granulation tissue treatments on Tuesday and Thursday this week. Without going into nasty details....basically the medication that burns off the excess skin got on her "good skin." She has burns about an inch around her g-tube. We had to go back to see the surgeon yesterday and they put a special dressing on it. We have to go back every week for them to keep an eye on it until it is completely healed. Needless to say I was very upset because this is something that never should have happened in the first place! Poor little Mya!!!

Hopefully only a few more days left of planting!! We are looking forward to Daddy being home!!!

Wednesday, May 27, 2009


And she's off!!!! Crawling like a big girl!

Swimming in Grandma and Grandpa's new pool!!

Daddy thought I should play with my first toad!

Could they look more alike! Seriously!

We went ahead and tried the Erythromycin over the weekend to see if it helped Mya's vomiting and it actually made it worse! I finally called them back on Monday to let them know what was going on and the doctor told us to stop it immediately. He said that some kiddos do not tolerate it well and Mya happens to be one of them. She has been off the medicine and back on her regular formula since Monday and is doing much better! She is still vomiting, but nothing like what she was! Monday she got sick 6 out of the 7 bottles! So far...she has not tolerated the increased calorie formula or the medication! We finally got all the insurance paperwork done today! Thank goodness! If I don't hear from the scheduling department tomorrow about the dates of her tests I am to call them back on Friday! So...I would say Friday we will know when her tests are going to be. I pray that they can get us in as soon as possible! This poor little girl has been through so much!! She is full of all sorts of new noises and sounds! She is crawling and cruising on the furniture and loves every minute of it! She had to have a treatment done on her granulation tissue on Tuesday and we go back again tomorrow for another one! Hope it does the job this time!

Friday, May 22, 2009

Mya is still having a lot of vomiting so I called and spoke with the doctors in Ohio. We are going to go ahead and start her on the Erythromycin until we can get the tests run. He said that would give us a better indication if it is an emptying problem or not.

He really wants to get these tests and see what info we get. The nurse said sometimes it indicates that a child just has a really small tummy, their sphincters are not working, the sphincters can are webbed, or some other anatomical problem. They are also going to take small biopsies while they are doing the scope. They will test the tissue for different diseases like celiac disease, etc.

They actually called to schedule the test, but we are waiting for the COBRA insurance paperwork to go through!! How frustrating!!! We mailed it back the same day we got the form and they still do not have the insurance re-issued! I am to call back again on Tuesday to check and see if they got it taken care of!

On a good note....Mya started crawling today!! She has been really close the last few weeks but finally got brave enough to give it a go! I am so proud of her!!! She has made such great progress! Her physical therapist is going to be thrilled!

Tuesday, May 19, 2009

Good Trip!!

We had an awesome trip to Cincinnati! All the doctors and therapist we met with were great. The main focus of our visit was to get a second opinion about her progress and vomiting.

I feel like they are more in tune with our needs at this point in our journey. Riley is not a bad hospital and the doctors are good at what they do there. I just feel like we are not seeing the entire picture. I feel like we are just waiting around until Mya finally outgrows her problems and we do not even know for sure if she ever will! I just want my daughter to live to her full potential. In my opinion if she is safe to eat baby food and drink thickened liquids then she needs to be doing so!! She is never going to get off this feeding tube if she never starts eating!! But.....she won't eat if she is vomiting multiple times a day and has tube feedings every 3 hours!!

Dr. Dusick at Riley pretty much said here is the ounces she needs in a day, try the new formula, if you want to give her Reglan talk with the surgeon, and see you in October! Wow!! I need a little more help than that!!

The plan from Cincinnati is have Mya come back in 4-6 weeks for a scope and probe study. They will put her to sleep and look inside her esophagus, stomach, and intestines. They will see if anything abnormal shows up...look for inflammation from vomiting....look for causes of her aspiration...look for causes for vomiting...etc. They will then put a tube down her nose (similar to the NG tubes she had in for over 4 months). She will have this tube in over night and will measure several different things. It can tell us how much reflux she is having, how high up in the esophagus it comes up, how strong the acid content is, if she is aspirating the reflux into her lungs, etc. The team feels that these two additional tests can tell us a ton of information!! After the results we will go from there.

In the mean time...we are going to gradually increase her caloric intake from 24 cal/oz to 30 cal/oz. The hope is the more concentrated the formula the thicker it becomes. (Similar to the idea of thickening formula with rice for children with reflux) We will due this hoping she is able to keep the thicker formula down. If this plan does not work....they have suggested starting Erythromycin instead of Reglan due to the side effects to help her stomach empty quicker. If meds do not work we will try a paste as a formula.

If the paste does not work the next step is to give her baby food consistency foods through her feeding tube. The last alternative is surgery to tighten the sphincter so she can not throw up or move her feeding tube to directly into her small intestine.

Wow!! A lot of information!!! Once we are able to get her to the 30 cal/oz formula she will be backed down to only 6 feedings a day!! Which means....feedings every 4 hours!! Which means...more hunger drive! When she is actually hungry and not throwing up she actually does pretty well with eating! So...for now that is the plan! The GI doctor made it very clear that we need to communicate with him. Which I love!!! He said if I don't hear from you I am left to assume things are going well. So...we have to call if the plan is not working to move to another option!!

So hopefully....less bottles per day at a higher calorie content, more eating by mouth, and less vomiting!!! Sounds like a good plan to me!!!

Monday, May 18, 2009

We got in!!

Matt and I are going to be taking off for Cincinnati in a few hours!!! They called this morning and had a cancellation! The nurse said after talking with me they went ahead and moved us to the top of the list! We will be there most of the day and should get home tomorrow night. In rare cases they keep you there for a few days to do testing right then and there.

I finally think all of our prayers have been answered!!! I know it's going to be a long road but I feel like they are going to really help us!! Thank you to everyone for all your thoughts and prayers! Mya is truly a little angel!

Saturday, May 16, 2009

What a day! What a day!

Since our last appointment on May 7th with Dr. Dusick I have been running all these different scenarios through my mind. One scenario they had given us was that Mya is possibly constipated. Although she has normal poops every day sometimes children with low muscle tone are still constipated but the stool they are having is going around a blockage. Complicated huh!

My mom actually pointed out to me that when Mya had her surgery they gave her a laxative because the anesthetic can make their bowels lazy. She ended up pooping like 10 times that day! Once we finally got home from the hospital she actually went about a week without vomiting. So...I just kept thinking.....what if she does have a blockage.....what if all the build up is causing her to vomit again???? I called Riley this morning and spoke with the Developmental doctor that was on call for the weekend. She agreed with the thought and wanted us to come down to get an x-ray of her abdomen so we could see for sure. Well...needless to say she does NOT have a blockage. Not that I wanted her to....but I do want to solution to the problem!!

The on-call doctor is suppose to call Dr. Dusick on Monday and then she is to get back with us as to what is next. Cincinnati called me back and the Feeding Team there is booked out until September!!! We are on the first available waiting list and are waiting to here back if we can get into their GI doctor ahead of time. I think all of my persistence will someday pay off!! At least I can sleep better tonight knowing she does not have a blockage!!

Thursday, May 14, 2009


Mya- Ready to go help her Daddy farm!

Pulling myself up like a big girl!

Well...I wish I had some better news to blog about Mya. She is still struggling with her vomiting. We are getting her new formula today. I actually called last Friday to check on the order and they said it was on the nurse's desk and they would get it faxed. After not hearing anything on Monday and Tuesday I called back on Wednesday to check on it. Come to find out the doctor never wrote out the script to have it faxed!!

How frustrating!!! After a few phone calls yesterday the order was finally faxed almost a week later! What a mess! Matt and I are considering possibly getting a second opinion from a GI doctor or possibly at Cincinnati Children's Hospital. Dr. Dusick can not get Mya back in until October and I feel like we have kind of been left out to dry! She has not gained weight for over 5 weeks and is still vomiting every single day! We had made a great break through with her solid food intake but with all the vomiting she is not very interested again.

I guess my personal opinion is...what would a second opinion hurt? I have spoke with a couple who's story was so similar it's almost scary and they ended up in Cincinnati and saw vast improvements in their son under their care.
We are only in the paperwork process of both the GI and Cincinnati so I guess we will see what happens. In the mean time.....let's just pray for the best for our little Mya! The physical therapist was very pleased with all the new things Mya is doing since she saw her a few weeks ago. She is pulling herself up to lower surfaces (her Zebra toy and play table). She is also getting up on all fours! Mya is finally starting to roll the way she used to....I think her G-Tube site is finally healing well and is not so sore to roll on. We are still working on crawling and cruising but she is showing great potential!
Mya's new Button!!
Her old G-Tube site before she got the button!

Thursday, May 7, 2009


Yesterday was such a long day! But I feel like we got some good information. First for some good news.....we finally got the results of her urine genetic screening...NEGATIVE! Yay! The test does not completely rule out any sort of genetic or muscle disease....but gives them a good indication if there was one. (They would have to take a muscle biopsy to know 100%).

Our main issues were the vomiting and her weight. After they looked at her growth over the last 3 months she was happy with where she was considering all she has been through. Although she has pretty much not gained any weight since her surgery which was 5 weeks ago. Once again...she feels like if we can control the vomiting her weight will not be an issue. She actually has a ear infection so they gave us antibiotics for it. She may be running into ear problems because of all her vomiting. The fluid is draining down into her ear canal. So...basically all the extra fluid is causing the ear infection.

We are trying a new formula that is even more broken down than Nutramigen. The hope is that the formula will be easier and more quickly digested. If the formula does not work we will be trying a new medication called Reglan. It helps to speed up the digestive process. The surgeon says it either works amazingly well or will not affect her at all. If neither one works.....well lets hope one does! There are two different surgery options as a last ditch effort. But all of our hopes are that things start to settle down and we can get everything back under control. We had her vomiting under control for a few weeks before the surgery so we know it is possible!! Hopefully we can just get back to that!!

Mya also had more granulation tissue build up on the top of her button. It is pretty much the body's way of healing the area from a foreign object. Not all children have it....but it is not uncommon what so ever. The surgeon treated it again which was absolutely horrible! By the end of the day Mya had just had it!! She slept the entire ride home! Poor girl!! So no more baths for a few days until the built up tissue falls off and heals.

Dr. Dusick said she is going to be reviewing her entire chart, tests, labs, etc. We still do not know the exact reason for her aspiration, feeding issues, and low muscle tone. I am convinced we will probably never know what caused all of this. She is going to let us know if she wants to run additional tests before her next appointment. But so far all the tests they have done the results have been negative!

We are to try the formula and then Reglan if that does not work and be in contact with them of how things are going. We are to also cut back her solid food intake to just a few bites a day until we get the vomiting under control. (Which we have been doing this past week any way)

What an emotional day!! We go back to the physical therapist again next week and to see Colleen (her feeding therapist). We need to get to work on her drinking and eating skills again! We want this little booger to be able to eat Birthday cake in a few months!

Wednesday, May 6, 2009


Mya has her appointments tomorrow down at Riley. We have to leave the house at around 6:15 so it's going to be a long day! She has appointments at 8:30 and 2:15! Sara called and we had to reschedule her feeding appointment because she had a death in her family. I hope we can get all the vomiting figured out! Poor girl has been throwing up almost every day! Hopefully Dr. Dusick has some answers for us!

Friday, May 1, 2009

Mya got her button!

We ended up making an unplanned trip to Riley today! When I went to get Mya dressed...(yes it was like 9:30 in the morning I know what kind of mother am I!)...I noticed her g-tube was sticking out of her belly about a 1/2 inch and the tape was very loose. I called Matt to help me and we taped it back down.

I went ahead and called down to Riley to see what they wanted me to do. We have an emergency kit with us at all times if it were to get pulled out.....but was hoping I would never have use it! I ended up getting ahold of them and they wanted us to bring her down to play it safe!

There was actually only one stitch left holding the g-tube in so I think it's a good thing we went down! (The stitches inside were already dissolved and there was only one outside stitch left.) She was scheduled to have the replacement done next Thursday...but it was not going to wait that long. Mya also had some granulation tissue so they treated that while we were there also. Granulation tissue is pretty much extra skin that had built up around the tube. They put medicine on it to kill that tissue. If it does not work she will get another treatment when we are there next Thursday.

Switching the tubes out went pretty quickly.....Mya hated it though! Poor thing!!! I don't think the nurse was her favorite person!!! It looks good....just sore!! I'm sure she is going to sleep well tonight!

We are noticing a trend with her vomiting and the days she gets baby food. The more baby food she eats the more vomiting she does! I think we are going to take her off it again for the weekend and see what she does. Thursday's appointment with Dr. Dusick can't come soon enough for Mya and myself!!

Her weight was better as of yesterday! Thank goodness! She is about at what she was a month ago when she had the surgery! What a long road it has been and what a long road it's going to be! We finally get her interested in eating baby food and now we are taking it away again! One of these days we will figure it out!

One good thing came out of the day...she can take a regular bath in the tub now!! Yay!!!